Its almost impossible to begin to even write this post...
we have been on one hell of a roller coaster the last few days and now we have crashed. yesterday makenzies results came back for the sma test, it was negative. happiness, fear, joy, frustration were just a few emotions we were feeling. did that mean it was a good thing or a bad thing. the doctors were shocked. she was diagnosed as an sma baby, now its not true...
the doctors wanted to take a step back and look over everything once again, come back the next day (today) with a clear head and see what we would do next.
the doctors came back with a solution... they went back and looked at her chest xrays, all her charts, all the other many many tests they did over the last couple weeks and pretty much figured out what they think it is. they sent some blood to get another genetics test done which unfortunately could take 3 weeks - 3 months before we will get the results back. in the mean time, there is a test they can do and get immediate results to make a diagnosis.
they did an ultrasound of her chest, diaphragm. her diaphragm worked great while she was on the ventilator however once they turned it off her diaphragm just sat there. that means her diaphragm is paralyzed. the only neuromuscular disease that has a paralyzed diaphragm is whats call SMARD = spinal muscular atrophy with respiratory distress... this is a very rare type of sma... rare meaning only 5% of all sma patients have it.
smard is very similar to sma except it also has respiratory distress. that means instead of her muscles and nerves slowly deteriorating first, its her respiratory that goes first (the reason for her paralyzed diaphragm) then her muscles and nerves. this is different from just sma which is why her test came back negative.
what does this mean- we have a few ridiculously unimaginable options...
-we could leave makenzie here in the hospital on the ventilator until her little body gives up.
-we could get her a tracheotomy. this would mean she would be able to go home but it would also come with all the risks and responsibility's of having a trach. for kenz, it would be more than having a trach. she would have a much greater risk of getting sick and all sorts of different infections. this option would also have makenzie slowly deteriorating at home. most smard children are completely paralyzed before age 1 (not even able to lift a finger). they are not sure if she would make it to age 1 or if she would deteriorate sooner or maybe later. this would leave us to watch her slowly go.
-the last option would be to let our incredible little girl go now. take her off the ventilator and let her go in peace.
there is no easy way to write this. there is no easy way to make this decision. i want to run and scream. i cant believe this is happening.
i don't know how any parent could make that decision and now I'm in the middle of it.
of course i say right now, like many would, i don't care what i have to do or learn i just want her. but this really is not about me and what i want but what will give makenzie the best quality of life.
for kenzie she doesn't know any other life than the life she is living now so she would be used to this way of life but is it fair to her to live that life?
I'm in the middle of denial and excruciating pain. this is not how life was suppose to happen for her. i cant believe ryan and i are now in the position we need to choose our daughters life. i cant believe I'm not going to grow old with my daughter, i cant believe i wont be able to send her to school, watch her dance, take her to play dates. my world is crumbling and i am being buried alive. ryan is right here with me. we are both trying to be strong but no matter what we do our world is hell. I'm angry now. I'm sad, beyond sad and beyond angry. its not fair. i don't understand why this is happening to my baby. i don't understand why she cant just be a baby and grow up. i need her to yell at me and call me names when she is teenager, i need her to want to play barbies with me for hours when she is 6, i need her to be my best friend for the rest of our lives. i cant even write these words out and really express our pain. there is nothing to even say- our life is over in our eyes. its so hard to see how we can get past this. i cant imagine my life without her hands, her eyes, her smile, her feet, her tummy, her knees, her butt, her ears, her nose.... i don't know how i can wake up tomorrow knowing its one day closer to not having her. i don't even know what I'm suppose to do or think.
i cant even write another word-